Timothy Burns is 27 years old. Before age 3, he underwent six open-heart surgeries for a congenital heart condition — mirror-image dextrocardia.

“I have no center wall of my heart, and my heart planks to the right side,” Burns says. “My oxidized and unoxidized blood mix, so I’m in a constant flux of a high heart rate and a low heart rate.”

Some days Burns feels exhausted and doesn’t have the energy to be physically active. During the last few weeks, when Eugene’s air quality was deemed hazardous because of nearby wildfires, Burns and his wife spent a day passing out masks to the homeless.

“I got home, and I thought I was going to die — I thought I was having like a micro heart attack or something and slept for eight hours,” he says.

Burns’s worries are not without reason. Because he is a graduate student living on a fixed income, Burns can afford only student health insurance through Pacific University. Although he’s insured, Burns cannot afford to see his cardiologist — a visit to a specialist is not covered by his insurance — but he should be seen annually to monitor his heart.

When Burns was still covered under his parents’ insurance and was still able to see his cardiologist regularly, he says, “they were discussing a pacemaker. So it’s one of those things of not if I need it, it’s when I need it.”

Burns says his health insurance situation is a matter of life and death. And he’s not alone.

In 2009, the American Journal of Public Health found that an average 45,000 uninsured Americans die every year. In 2017, the United States was listed as the 13th wealthiest country in the world with a GDP per capita of $57,293. Despite being one of the richest countries in the world, the U.S. was also home to a reported 23,000 infant deaths in 2014, according to the CDC.

Insured Americans aren’t getting their money’s worth for the health care they pay for. The U.S.’s privatized health care system is so complicated, expensive and exclusive that millions of people remain uninsured. Thousands die waiting for health care and paying for health care also forces families into bankruptcy.

Former presidential candidate Sen. Bernie Sanders has introduced a “Medicare for All” bill that would overhaul and expand the government-run single-payer system. In a New York Times op-ed, Sanders writes, “I have heard from older people who have been forced to split their pills in half because they couldn’t pay the outrageously high price of prescription drugs. Oncologists have told me about cancer patients who have been unable to acquire lifesaving treatments because they could not afford them. This should not be happening in the world’s wealthiest country.”

But Congress has repeatedly shown where its funding priorities lie. On Sept. 14, the U.S. House of Representatives voted in favor of a $1.2 trillion spending bill; it includes an earlier package that secures $1.6 billion for a down payment on a border wall with Mexico, despite a steady decline in unauthorized immigration since 2007.

One population that has increased, however, is the number of uninsured Americans, which rose from 10.9 percent to 11.3 percent during the first quarter of 2017, according to the Pew Research Center.

As Republicans decry the Affordable Care Act (ACA), proposed alternative health care bills in both the House and Senate would force the brunt of health care costs on the American people. Those plans would result in anywhere from 16 million to 32 million people becoming uninsured over the next decade or so, according to the non-partisan Congressional Budget Office.

“They’re so driven by the desire to deliver tax cuts to people who have investment income over $200,000 a year, that was the core of the House bill,” Rep. Peter DeFazio says. “To them it’s more important to give those people a tax cut than it is to provide affordable accessible health care to millions of people.”

As the debate spirals on about health care in the United States, Oregon is gaining support and momentum for a statewide system that would cover all Oregonians. Doctors, along with some of Oregon’s congressional and state representatives — even citizens in the state’s eastern, Republican-voting counties — have been showing up to town halls to support a universal, single-payer Medicare-for-all system.

Under different titles and with slightly varying payment structures, universal health care is mandated in approximately 75 countries in the world, according to “The Political Economy of Universal Health Care Coverage.” The paper says that researchers from Harvard, Oxford and the London School of Hygiene and Tropical Medicine found “… a legal commitment is insufficient on its own and must be translated into policies that establish a comprehensive, largely publicly financed system. An over-reliance on partial and private sector-focused care appears to disproportionately benefit richer groups, reducing both efficacy and access to coverage.”

Thousands of Oregonians have been enrolled in the expansion of Medicaid under the ACA, but insurance instability, access to health care and rising costs are issues that lawmakers and doctors say need to be addressed. At the national level, repeal attempts have failed repeatedly, though a new attempt, the Graham-Cassidy Bill, was introduced earlier this month in the Senate. President Trump has vowed to stand back and let the health care system fail with the support of many Republican politicians.

Oregon state Sen. James Manning was a chief sponsor of Senate Bill 1046, which would provide comprehensive health care coverage to all individuals residing or working in Oregon. The bill would repeal the state’s health insurance exchange, according to the bill’s summary.

The bill was in committee when the Oregon Legislative session ended in July, but Manning says there are a number reasons the bill needs to move forward. He says many Oregonians who are uninsured continue to use the emergency room as a primary care facility.

“[It’s] a good bill for us to move forward on, we can certainly make it better, but we have to make a move on it because the uncertainty of what’s going on in Washington D.C. has me really concerned,” Manning says.

Manning lived in Australia for three years and says he used the universal health care system there, which he says focuses on preventative care, and he never saw any excess wait times.

He says the model showed that they care for people and that everybody having access to quality health care was really important. “That really convinced me that this is something we are lacking here in America.”

SB 1046 was also supported by Health Care for All Oregon, a coalition of 120 organizations supporting statewide universal health care. “Our plan would be comprehensive health care probably as good or better than what Medicaid people get now, and it would cover eyes, ears, mental conditions,” HCAO Eugene chapter president Lou Sinniger says. “It would cover you from head to toe.”

Sinniger says it’s difficult to talk about universal health care because “people have been brainwashed over the last 60 to 70 years that health insurance means health care, but health insurance does not mean health care.” He says he frequently meets people who can’t afford to use their health insurance.

“We have a plan in place that we’re taking along the way to get to a ballot measure either referred by the legislators or petitioned for by us by 2020, and it would be full coverage, privately delivered, publicly funded health care for everybody,” Sinniger says.

HCAO meets the first Tuesday of every month at the First United Methodist Church in Eugene.

At the Eugene chapter meeting Shirley Kingsbury, a retired nurse, says she supports universal health care. She’s 88 going on 89 and, throughout her career, treated people who couldn’t afford to see a doctor. “A healthy and happy community is one that has health care for everyone — not putting people into boxes of those who can afford to pay or those who come from some other place or are critically ill or would cost more to care for them than for others,” Kingsbury says.

Although Kingsbury gave up her nursing license at age 80, she continues to spend her time caring for people. She’s a parish nurse at her church and helps people find health care resources and coordinates health care education. Growing up in Bend during the depression, Kingsbury says she and her siblings received quality health care from their family doctor, who delivered Kingsbury’s sister and removed Kingsbury’s tonsils — despite her father only being able to pay a dollar or two.

A universal system isn’t a radical idea or a foreign concept in the U.S.; the federal government oversees Medicare, Medicaid and the Veterans Health Administration. But the separately run systems need improvements.

Marc Shapiro is also a member of the group and is a Medicare recipient. He supports a universal system and says Medicare doesn’t cover dental or eye checkups.

“Medicare Part D is a disaster. There are no cost controls,” he says. Shapiro is 75 and has been living with lung cancer for the past 10 years. “The drugs that keep me alive cost $6,000 a month,” he says.

In the past 10 years, he says, he hasn’t ever used the same Part D plan. “It is so complicated that many seniors cannot figure out what their best deal is, and so they just stay in the same plan, which invariably costs them more with increased deductibles and co-pays each year,” Shapiro writes in an email. “It’s a mess and another windfall for the insurance companies.”

Shapiro also supports health care for all on behalf of parents who have to choose between getting coverage for themselves and their children. He tells the story of a woman who was in a car accident, but couldn’t afford coverage under the ACA. She suffered serious injuries, he says. “What happens to a kid if a parent gets sick?”

Peter Mahr is a physician and president of the Portland chapter of Physicians for a National Health Program. He cites a recent Kaiser Family Foundation poll, noting that support for a single-payer system rose above 50 percent, which is the highest the number has been since the foundation began keeping track in 1998.

Mahr says people don’t realize that they’re currently paying for universal health care and not getting it. “They’re paying their premiums, paying your out of pocket costs and you’re also paying taxes — four or five percent goes into Medicare and Medicaid.”

Going to a universal system would not involve insurance companies, Mahr says. “One-third of Americans do not seek health care because of costs,” he explains. “The type of insurance we’re spending money on oftentimes doesn’t give you very comprehensive coverage, number two its expensive, and number three you don’t have your choice of hospital.”

Health Care Discrimination

Rachael Phipps with the White Bird Clinic works on the billing side of the Oregon Health Care plan and with both insured and uninsured people. She says OHP’s restrictions prevent people from getting the care they need. White Bird is a nonprofit medical clinic, which prioritizes those who are unserved, underinsured, disabled or homeless.

“Public insurance is very frustrating to deal with. A lot of services are not covered,” Phipps says.

Patients struggle to pay for medicines and to get procedures performed, she notes. “Procedures like getting a blood glucose test, pregnancy test, a pap, or an impacted ear drum treated — those kinds of things are usually not covered without some kind of authorization.” Phipps says there’s also a limit to the frequency of times per year they can be provided.

While Mahr says Medicaid expansion has helped many people, he also argues that the system creates a bias.

“If you create a system where doctors get paid a certain amount for people who have private insurance through their job — let’s say for an office visit they get reimbursed $250 from the private insurance companies, $180 from Medicare for that same exact visit, and then they get paid $75 from that same visit from OHP,” he says. “Then you have a situation where they are biased in the system and people are discriminated against.”

Mahr says such bias would be removed if we went to a universal system where everyone could be seen regardless of their income or type of health insurance.

Timothy Burns says his family was insured, but because of the expense of his heart condition, they declared bankruptcy. “Even though we had really good insurance, it still wasn’t enough to cover all of the expenses,” he says. “So because of that my parents had to file for bankruptcy and get rid of their condo that they had, and move up to Oregon where they had no work or anything, but they wanted to be close to Doernbecher Children’s Hospital.”

Limited access to medical care in rural Oregon also prevents people from seeking medical attention.

“The bias is ingrained in our system,” Mahr says. “I, as a physician, believe that that’s wrong. You shouldn’t treat someone in terms of wait times or getting into a doctor based on what type of insurance they have, which in our system is linked to how much money they make in many cases.”

The ACA Conundrum

Even under the ACA, which caps some out-of-pocket expenses, one Eugene couple continues to face debilitating health-care costs. Vicki Anderson recently retired to be the full-time caretaker for her husband, who has Parkinson’s disease. She’s uninsured and says prices of prescription drugs and the costs associated with health insurance are astronomical.

Anderson says the couple’s savings is “being drained away. We already sold our house, we’ve already gotten rid of cars, because health care is squeezing all of our finances to where in the end, if he lives too long, we will be filing bankruptcy.”

After the ACA passed, Oregon expanded its Medicaid program by accepting federal funds. As a result, 973,271 people are covered by Medicaid, which was an increase of 346,915 people, reducing the uninsured rate by 62 percent from 2013 to 2017, according to healthinsurance.org.

During a late-night debate on the Senate floor on July 28, Oregon’s U.S. Sen. Jeff Merkley introduced 100 amendments to the later defeated “skinny repeal.” Merkley tells Eugene Weekly that he wants a “bipartisan bill” and wants to “make the system work better.”

“One out of three individuals in rural Oregon is on the Oregon Health Plan, which is Medicaid. A substantial number of them were able to get on the Medicaid because of Medicaid expansion,” he says.

The senator says people are showing up to his town halls, even in Republican majority counties, with one message: “Please stop this destruction of our health care system.”

David Labby, a medical doctor who works with Health Share Oregon as a health strategy advisor, says the best benefit of the ACA was bringing “health care to so many people. Oregon stands out as a state that really took advantage of the Affordable Care Act, and I think Oregonians have hugely benefited.”

Before the ACA, Medicaid was available only to individuals with dependents. “You could have no income whatsoever and not be able to get Medicaid,” says Jack Meyer of Health Management Associates, a research and health-consulting firm based in D.C. Setting ground rules that prevent discrimination against women and people with pre-existing conditions is another benefit of the ACA, Meyer says.

Despite the expansion of health insurance and key provisions that don’t allow coverage discrimination, the ACA is in need of critical repairs. Medical costs continue to rise, and many people don’t have access to health care providers, either because they live in rural Oregon or because insurers are dropping out.

“I think the payment structures are also complicated, byzantine, burdensome. We pay for services — not outcomes. It would be hard to imagine creating a worse payment system than the one we have,” Labby says.

Merkley echoes the need for cost controls. “We need to nail down the cost-sharing payment, the contributions made to companies, so they can lower premiums and out of pocket expenses and deductibles,” he says.

Costs are also driven by the price of drugs, but health insurance companies do not have the ability to negotiate drug prices with pharmaceutical companies.

“No other developed nation imposes this kind of continuous health care stress on their citizens, and I think we really do need to look at building a system that provides a lot more peace of mind,” Merkley says.

Political Sabotage

Meyer, who worked under the Ford and Carter administrations, says, “It’s also important that the Trump administration stop trying to sabotage this law administratively. They administratively narrowed the open enrollment period from three months to six weeks for this fall.”

Meyer adds that, “Affordability of deductibles, narrow networks and withdrawals of insurers from some markets are among the more serious problems” with the ACA.

Earlier in the year, Trump talked about universal health care coverage. Quoted in the Washington Post, Trump said, “We’re going to have insurance for everybody. There was a philosophy in some circles that if you can’t pay for it, you don’t get it. That’s not going to happen with us. People covered under the law can expect to have great health care. It will be in a much simplified form. Much less expensive and much better.”

During the night of the skinny repeal vote, Merkley told CNN that many of his “colleagues knew this was the wrong thing to do but they were being pressured so hard to take this vote.”

DeFazio says he doesn’t get why Republicans are trying to prevent Americans from having access to health care. “They’re just oblivious to tens of millions of Americans who are struggling to get decent health care,” he says.

DeFazio’s district has the fifth largest number of people on expanded Medicaid, he says. The district represented by Oregon Congressman Greg Walden, who has supported the repeal of Medicaid expansion, “has the second largest number of people in the United States on expanded Medicaid,” DeFazio adds. “I don’t get it; they live in a different world.”

Eliot Treichel is an adjunct professor at Lane Community College. For the past few years, he has had to wait to sign up for health insurance because he doesn’t know how many classes he’ll be teaching until a few weeks before fall term begins. “Full-time faculty members can cover their families for $11.66 a month. The cheapest I can cover my family is about $500 a month with a really high deductible,” he says.

Treichel put off having a colonoscopy for three years because of lack of coverage, and when he finally went in for the procedure, the doctor found polyps, which had to be removed. He received a surprise $1,700 bill in the mail a few weeks later. Although his insurance covered the procedure, the company didn’t pay for the removal of the cancerous tumors.

“It was tough to get the colonoscopy scheduled in a timely manner, and I can see how people put off basic sorts of things because of insurance and costs,” Treichel says. “I got multiple bills from PeaceHealth, the surgeon who performed it, I got bills from the imaging people. I could not make heads or tails of my explanation of benefits or the bills, and I actually called both Moda and the hospital.” And after an hour-long conversation with the health insurance company, Treichel says, “They couldn’t even really explain it to me.”

In July, Sen. Ron Wyden sat down with EW and discussed health care. He says his innovation waiver, section 13.32 of the ACA “allow[s] a state to go further than the Affordable Health Care Act. So you could have Oregon, without passing a single federal law, Oregon could go do this tomorrow if Oregon wanted to,” Wyden says.

When asked if he personally supports a universal health care or single-payer system, Wyden’s office sent the following comment: “Senator Wyden wrote the section of the Affordable Care Act that lets states give people the health care they want, which could include state-based single payer. He is eager to work with Senator Sanders toward their shared commitment to achieving universal coverage.”

Among Wyden’s top donors from 2013 through the 2018 election cycle, which are made up of both individuals and super PACs, are relatives and employees of Blue Cross/Blue Shield and DeVita HealthCare Partners, according to OpenSecrets.org. Insurance companies, along with hospitals and nursing homes, are among the top industries that donate to Wyden.

If Congress succeeds in repealing the ACA, Wyden’s innovation provision is protected, so states would still be allowed to move to a single-payer system.

Timothy Burns still doesn’t know when he’ll be able to see his cardiologist again. “Personally, for me, it sucks having to live in fear of your own body [and] not know if you’re going to wake up and not be able to get out of bed that day,” he says.

Other parts of Burns’s future are up in the air, too. He doesn’t know whether he’ll be able to have children because he worries he won’t be able to take care of his own heart condition.

“I might not live long enough to have kids,” Burns says.

“It’s this fear of the future because you can’t control your own health,” he says.

“We treat health care in the United States as a class issue and believe that health care should only be for those who can afford it, as though a right to health is only if you have enough in your wallet, and it just shouldn’t be that way.”

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